Remember what it was like when you sat across your Dr and they said... Well according to these tests you have MS...
Tell your story 🙂 🤗💕🌠
Tell your story! : Remember what it was... - My MSAA Community
Tell your story!
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johnMSAAPartner
Love this idea, Jesmcd2 ...looking forward to hearing everyone's stories, and to see that no matter how different they are everyone can learn from each other's ❤️
- John, Multiple Sclerosis Association of America (MSAA)
In 2006 I was in the process of trying to buy my first house, I was on call at my work (I worked the helpdesk for computers/ and learning the phone system at a local hospital). We had an issue with the phone system and phone calls were not being routed correctly....talk about stress!
Woke up one morning and I had blurry vision and I could not read what was on my computer screen. Thought maybe my glasses prescription had changed. Saw eye dr, she said she could not see anything and that my dr may want to send me for an mri. Called my family dr and he said that I needed to see an Opthamologist (not Optometrist). Only 1 Opthamologist had openings quickly (otherwise they were like a month at least out). Saw Opthamlogist and said he couldn't see anything, said it most likely my antidepressant that I had been on for years. We had a disagreement and he finally wrote a script for me to get an mri of my brain. That's where the fun started.
Mri of my brain showed lesions that looked like MS so my family dr referred me to a Neuro of my choice. Went for all my testing over a few week period, and went to Neuro for results. He never gave me a headsup of what it could have been before testing....he just came out and said 'you have multiple sclerosis'. Never heard of it before, I was in shock, I cried. He said that I needed to start a medication ASAP. He gave me the info on the available shots at the time..think there were 3, maybe 4 at the time. I chose Copaxone (only the daily version was available then) because it didn't have any flu side effects that the other did.
Everything was pretty much a blurr from back then, but I remember my Neuro sent the script to my insurance company, then I received a call from a nurse to schedule a time to come to my home to show me how to do the injections. The rx had arrived at my home the day before she came and I was to set out 1 syringe before she arrived. She had a practice kit to show me how to do my injection. That went well. Then I did my first injection and that went well.
Couldn't believe this was going to my new life.
My diagnosis started at an ophthalmologist, too. I certainly wasn't expecting my eye problem to be neurogical!
Me either! It was a crazy time that seemed to drag on to finally find out what the problem was but when I look back, it was actually pretty quick that I had an answers (2-3 months after all tests/doc visits), as shocking as it was.
I was diagnosed by a chiropractor.
He took it harder than I did!
From there I had an MRI, Lumbar puncture and motor skills tests which confirmed his diagnosis.
I was relieved to find out why I was feeling electrocuted.
Being diagnosed with Type 1 diabetes in my 20's helped as it prepared me for all the uhhhhh "help" from well meaning people I was going to hear, not to mention horror stories from those who get a charge out of being an AH.
One can learn so much about their character that way so MS does have it's benefits.😜
disinterested cat
Wow! After years of no answers from doctors, I was finally sent to a neurologist by a chiropractor! 🙂
I think I was diagnosed fairly quick compared to others here.
That's great though. I'm glad you didn't have to go through a decades-long ordeal!
Yep, I am grateful for that.
Love the cat photo!! 😆I totally get what you are saying 🤗
My diagnosis actually came as a relief. I'd had obvious problems since I was 15, but no one would take me seriously back then. Found a doctor at 22 who believed there was something wrong, but she didn't know what. She kept sending me to specialists and for tests, but everything came back negative.
This was back in the Dark Ages before computers and fax machines, so everything moved at the speed of molasses. It wasn't unusual to only get one test a year because of using snail mail for authorizations and test results. When I got my first MRI, there was only one place in the whole county that had a machine, and it wasn't a hospital.
By 38, we were sure it was neurological, and that's when I started considering MS. It was another 18 years before I found a great neurologist who really listened to me. He did more in 3 weeks than all the others had done all those decades. My only response to the diagnosis was “Yippee! I've been telling you all I was sick!”. 😁
I was relieved, too. But wow, it really took a long time for you. So glad you finally got diagnosed.
I was told several times; by my husband, optho, and finally my neuro gave me the official diagnosis. My story is too long and started over 20yrs ago. MS became real to me when I watched my neuro exam. I remember having a million thoughts and none at the same time when the world stopped. Somehow my neuro knew what I needed to hear, and I bounced out of the office with all the things I needed to get on with in focus. That doesn't mean I didn't grieve, I did.
My diagnosis started when I got optic neuritis, so at an ophthalmologist like some of you. She was so nice but could not figure out why my vision was so bad when my eye looked so healthy. She asked me to use moisturizing eye drops and come back the next day and the results were the same. When I got home there was a message from her saying she had made me an appointment with a neuro ophthalmologist at a university hospital the next morning at nine am. My now-husband was then my new boyfriend and he took the day off of work to drive me. I'm pretty sure I got every eye test in existence. They only let me have a lunch break because the dilating drops needed time to work. I thought the evoked potential test was crazy, but when they gave me an MRI, I got really scared. I cried while I got the IV put in for the contrast. Then after they looked at the results, they said "they forgot" a scan and put me back in the MRI machine. The tech was grumbling that she hadn't forgotten anything, which I took as a bad sign. Then the nice doctor gently told me I had brain lesions that would undoubtedly lead to a future MS diagnosis (I guess they call that CIS now). I actually started feeling better at that point. My late husband had two sisters with MS; one had difficulty with walking and the other was tired as heck and suffered from relapses, but was able to work full time and basically live a normal life. She happened to be married to a neurologist. All of a sudden so many things made sense - the fatigue, the brain fog, forgetfulness, and just being physically unable to do normal things like pedal hard enough on a bike to keep it upright, walk uphill without feeling like I was going to die, etc. My boyfriend joked that next I was going to be blaming MS for my bad hair days!
So, my brother-in-law became my neurologist, I started on Avonex (such lovely side effects, but only one injectionper week) and I asked my cousin to give me my injections since I am a big chicken. I became the only one in the waiting room at his veterinary practice without a pet. People looked at me curiously, and the first time I got a shot, his receptionist gave me a lolly pop! 🤣 After I got married, my husband took over the injections.
I got kind of caught up in my new diagnosis and never thanked the ophthalmologist, who must have had to pull some strings to get me in to see the neuro optho the very next day. I was also lucky to get a same day diagnosis, and to be given the news in such a kind manner, and to have a neurologist in the family. In fact I recently began seeing his son as my neurologist, for which I am so grateful!
I'm very sorry about your SIL, but the cousin part is hilarious!
Yeah, that's one of my better stories! 😁
That is quite a story! I loved the fact that you sat in a vet's office without a pet. hilarious! It's been quite a journey. I started on Avonex too. Back then, there were only 3 DMTs to pick from. The chills and shakes from the Avonex were so bad, that I fell out of bed on more than one occasion. 😂🤗
Yeah, those were good times. My shivering would shake the bed and wake my husband up. When I finally went on Gilenya years and years later I was so happy to leave the Avonex behind. It really worked for me, though, I will say that.
I remember it well. And like so many others, it was a validation of what I knew all along.
I started having all kinds of odd symptoms starting around 1996. I went to my family doctor who did the usual blood work, found nothing, and sent me home. Months later, weird symptoms came back, went to my doctor, got another blood test and was told "you're fine". Fast forward: four years later, five different family practice doctors, and not one considered it might be a neurological issue. I was told by one I had allergies. I was told by another I needed to lose weight. I was told I was making it up. I was told I was crazy. I was beginning to really believe I was crazy and losing hope.
Until one day I was looking through some health articles in a magazine and came across an article about something called M.S. There it was! All my crazy, seemingly unconnected symptoms! I couldn't believe it. I made an appointment with my family doctor, brought in the article, and told him I thought I had M.S. His response? He started laughing. I kid you not. I'll never forget it. He said there's no way I had M.S. and sent me home.
Later that week, I was crying to my Chiropractor about how frustrated I was, that I knew something was terribly wrong, and no doctors were helping me. He asked about my symptoms and I started to tell him about the pins and needles, the dizziness, the weakness and fatigue, the confusion, the numbness. He immediately put me in touch with a Neurologist.
One year later, after extensive testing, MRIs and a lumbar puncture, my neurologist said very matter of factly, "yep, it's M.S." I was so relieved by this point just to have a name for it. I found out that day that I was not crazy after all. And that was the start of my M.S. journey.
Wow, not a glowing reflection on the medical profession! That must have been horrible! I would have been crushed to be told I was too heavy, or lying, or crazy. It's like your doctors slept through the neurology stuff in medical school because they didn't want to go into neurology. But people don't magically teleport to specialists, it's the job of GPs to recognize a problem and send people there! I'm so glad you finally got diagnosed. Falalalala had a chiropractor help her get diagnosed, too. They can be pretty sharp. My late husband (before I knew him) saw a chiropractor who told him that a mole on his back looked ominous, and told him to get it looked at right away. It turned out to be melanoma. It even spread to other parts of his body, but he miraculously survived and it never came back, which was unheard of back then.
After literally decades of weird symptoms, I'd finally self referred to a neurologist at a teaching hospital. There I'd had the bloodwork, the MRIs, and the LP. The neuro called first to say she thought it was spina bifida occulta. Then a few days later, she called to say it was definitely MS. I was standing in the kitchen when I learned the news, but I knew no more at that moment than when I'd made the referral. I knew nothing about MS, but she wasn't the one to help me learn. My 70th birthday was a few days after hearing the news. I felt so alone.
Aw man, that was so callous of the doctor! It must have been very traumatic, and I'm really sorry that happened to you. How long was it before you learned more and felt like you knew what you were dealing with?
Despite being on staff at a teaching hospital, that neuro was not helpful. The diagnosis was thorough, so perhaps that was her skill. She had checked my walk, my spine, tested for all the tick borne diseases, but perhaps she knew nothing about MS except how to diagnose it. She was Bulgarian which may explain what followed.
The next week, when I went in with my daughter for moral support, the neuro explained that MS was an incurable neurological disease and I would eventually need a wheelchair. She showed me my MRIs with lesions. She told me that she would not prescribe a DMT because of my age (I was 70 at the time. When I saw her, thirteen years ago, many current ones were not yet available), When I asked if there were any alternative treatments, she went fully looney tunes. First she suggested a diet; wk 1, lettuce, water w/lemon juice, p-nut butter on a spoon, wks 2-4, vegetables and grains, some chicken and fish occasionally, then back to wk 1 and repeat. Her second recommendation was some sort of magic crystal with a flame inside, followed by a copper bracelet, and finally a battery footbath that would pull toxins out of my body. This is all woo-woo hokum of course. My daughter was livid and ready to report her to the medical society (and she may have as that doctor is no longer in practice in my state). I never went back. Fortunately, on my own, I discovered the MS societies (MSSA and NMSS). Both have been helpful and because of this site, though I still live alone and my daughter is not supportive, I no longer feel alone. Thank you for listening.
Holy cow!!! Did she suggest a necklace of garlic to ward off vampires, as well? What a nut job! In any case, I'm so glad you don't feel alone anymore. 😊
Yes, I remember like it was yesterday! I started feeling really tired in 2007, then started having dizzy spells! Finally, the headaches and double vision. I saw a total of (7) Doctors; allegedly the best in Neurological Health! I guess because I eat healthy and try to exercise twice a week at that time they thought I looked like the “picture of health.” Looks are deceiving aren’t they!!!! I was sick as can be, stumbled for no reason and back then I wore high heels with ease. Thank God, the last Neuro I saw specialized in MS. Looked at my MRI”s and said: “let’s get you on some med’s and get you back to feeling better.” We may not ever be the same, but I know and truly grateful that it’s not the worst! Count my blessings. Peace ☮️ NeeC
I couldn't agree more with the last part. 😊
So I was still working when I got the call from the neurologist who diagnosed me he said I need to see you now... I replied I am working he said when can you get here, I told him that I could make it the next day... My wife and I show up the next morning and he told me his strong suspicion was that I had Multiple Sclerosis, but he wanted to admit me to the hospital from there now, well I had told my supervisor that I would only need an hour or so for the appointment, so I said I have to get back to work... His expression changed from somber to amused and said " I have just told you that I think you have MS and you want to go back to work!!!???" I said yes I told them I was going to be back to work so I will be back to work.... I weighty pause and the doctor says "when then will you go to the hospital for the last tests a lumbar puncture, and another MRI. I said I am off this weekend... Years passed and a friend saw the same neurologist, when they realized that he new me the neurologist told him that story
🤣😂🤣 That sounds like what I told my Dr for my back surgery 🤣🤗💕🌠
CatsandCars in reply to
That's so funny! You are a man of your word. 😊 Plus, you had probably been living with symptoms forever, so what's a few more days, right?
stepsforNeeC in reply to
Wow…..!
I had the first sintoms in 1998 becuase of MS. After 1999 was the diagtostic with the lumbar puncture. And after the tratament Avonex in 2003, and after 2005 Rebif 44 to 2024 , now. So 26 years with the ilness. In 200472005/2006 I had problems with the right leg and 2006 in the right shoulder. But after I decided not to follow working , retiree, my ilness was going stable, I have hadn´t never problems in MR and neither again problems in the legs or shoulder, neither facial paralisis as in 2005 in my life working . Now since 2007 I am retiree, I do a normal live, maybe because of my diagnostic was fast in 1999,
I got somewhat better after I quit working, too. Sometimes holding a job is just too much and your body can't recover. It's great that you got diagnosed early and are still able to do everything you want to do.
In 2005 I presented with my face numb on one side. The Dr was a little perplexed & sent me for an MRI. Because I was in the cosmetology profession I knew just enough about cranial nerves to be worried about what was happening. When the results came back my Dr immediately sent me to an MS specialist. So I had an idea that it was MS vs a brain tumor. I was relieved, my husband thought it was the end of the world. I knew enough about MS to know it wasn't the end of my life, just life as I knew it. 19 years later, with a lot of prayer & lifestyle changes I'm on a DMT that is working for me, my MS is in remission & my face isn't numb anymore.
My story is unique in the both of my sisters had MS before I was diagnosed. Only God knows, but it’s very possible that I had MS some 20 years before my diagnosis. I have been a professional guy working in a white collar college degree requiring job, which I was quite successful. Sometime in the early 2000 things started to change with me that I did not understand, but I was unable to get another job where at one time in my life I didn’t have to look people would come to me . I began taking jobs, menial jobs, and typically got fired for things that I later find out were symptoms of multiple sclerosis. Friends, family and church members belittled me. and talked about me and to me as if I were a terrible human being and provider for my family. I began to believe this myself, and became so depressed until I was about to take my life. I am so grateful that one day I was laying in the bed, in the dark, contemplating how I was going to end everything when the door opened my 24 year-old son walked in the bedroom, sat down beside me on the bed and said. I love you dad. I said, I love you son. He said dad you have to go get help . I agreed to and rolled back over to go to sleep when I felt the covers being pulled back from the bed he said dad I mean now and if you don’t go, I will have to do what I do not want to do because I love you and that is make you go get help, I got up, and he drove me to the hospital, where I received the medical attention and psychological counseling regarding ending my life. Both of my sisters have MS and one sister in particular for two years had been asking me to go see her her neurologist and get an MRI. I finally did. When the results came in, I was called back to my neurologist, who broke the news to me that I indeed had MS. Not sure why maybe they don’t want to freak you out, but finding out how many lesions were on my brain was like pulling teeth. Finally, I asked bluntly, how long have you been doing this? Neurologist answered 30 years. I said then tell me what does your gut say neurologist says 50 to 75 lesions, but they have grouped together to become three black holes. Had I many years earlier been diagnosed, it might not have been as bad. When I received my diagnosis it was if an elephant had been lifted off of my back. I felt vindicated. There was a reason why the things were happening in my life were happening. It just finally had a name and I stopped internalizing my problems. This was in 2019 since then, my boy is married. I am on disability, but I dedicated my life to Jesus, and live every day as though it were my last. I am happier than I have ever been, and I’ve got MS. Go figure I’m grateful for the support that I get from this site and the interaction with some of the people. Knowing you’re not alone helps and hearing other people’s stories helps. People that I admire most are positive , humorous and just by talking to them if you did not know, you would not know they had MS. My favorite is Jessica who I communicate with as much as possible as she has an infectious attitude and she’s just funny. I know my journey is different than others but that’s it in a nutshell!
I was diagnosed on July 30, 2019. I had done all the test my neurologist lined up for me. After all that was done, my husband and I went to see him, and he dropped a bomb on me with the MS report. I cried. I was so hurt. I called my mom and that's when she told me I had 5 cousins that have MS. I was in shock again. That day was a horrible day for me, but I got over it and I am determined to not let MS win. Gotta keep moving. 👩🏾🦼
Yes my friend, catch me having a “Praise Party “ in church with my shoes off ! I tell MS you don’t know who “I serve “ and what He is capable of doing in my life!!!!
I agree 100%. I tell MS to get behind me. I serve the Most High.
Yes my friend- “tell it.”🙏❤️
My family doc told me he thought the tingling in my left foot sounded like MS. I was horrified as in high school a friend’s Mom was very sick with MS and died in her forties. The stress made things worse and I ended up in hospital where I had a hot bath test (1985, No MRI’s available) I closed my eyes and had to pick up a coin and identify it. I guessed. Turns out I hadn’t even picked up a coin!! After the results of a lumbar puncture my neurologist came in my room and cracked a couple of dumb jokes, said the tests were positive and walked out. Such a jerk. After a few years I switched to a lovely man at a university’s MS clinic. I had to learn how to do progressive relaxation as at times I was so afraid I thought I would implode. After reading the stories above I am so grateful I was diagnosed quickly, even though there were no DMT’s back then.
There’s nothing worse than an insensitive “jerk of a doctor.” One doctor I saw before I got connected to my Neuro said: “he wasn’t that familiar with MS.” Seriously????!
I started having symptoms in 1995 around Christmas. My first primary care doctor told me I just had a sinus infection and that’s why my face was numb. Even though I told him, my mother had MS (she was a quadriplegic by this time), he wrote that off.
Fortunately, a coworker had a recommendation for a different primary care doctor, so I saw him in Jan. 1996. He found I couldn’t stand up without swaying when my eyes were closed and feet together, took me seriously, and ordered an MRI. I still remember sitting in my office at work and getting the call from this new primary care doctor. He said he wouldn’t normally tell a patient over the phone but, since we had discussed the possibility of MS in his office, he thought he would go ahead and tell me. Yikes - panicky, numb, helpless feeling. My now ex- husband came to my office to be with me before I had to teach that afternoon. I remember teaching Psychology of Drug Addiction that afternoon in a robotic fashion, but I did it. Teaching my classes has been a beneficial escape ever since. Overall, I feel fortunate that it only took a couple of months to get that initial dx.
My GP was much the same! I went to him with weird feelings that would wake me up and leave a sense of deja vous. I asked him to refer me to a neurologist, but he told me I was just having panic attacks! It wasn't until a morning in Feb 2014 when I woke at my normal time and had a seizure right then! My brother had come into my room, asking if I wanted a brew because he was making our mum one, and seeing me with my head over my bedroom bin when he rushed to mum to tell her. She did the sensible thing and looked up my symptoms on the NHS Symptom Checker. That told her to get me to A&E, because it suggests that I had a transient ischaemic attack. She didn't know what one of those were, so I told her is was a "baby stroke". She got scared, we drunk our brews, brother got sent to school, and we got a taxi to the small hospital in our town. That has an A&E, and I was seen quickly by a triage nurse. She did observations on me, and she also did a pupil reaction test where I had a seizure! She got scared, had me booked in at the bigger hospital in the next town over on their clinical assessment unit because they have on-call neurologists. So, we go there, and I didn't have a seizure as the doctors were seeing me, but they got me referred to a neurologist who specialises in MS. That neuro had me do a few tests and had me admitted for a couple of days where I got an LP and started on lamotrigine. When I went to see my GP to get a repeat prescription of lamotrigine, his dark face went white with the realisation that I had been right all along! Screw you Dr Joseph! It's a good thing you're not practicing anymore, be it because you retired, or the GMC had enough complaints about you that they had to revoke your licence 😒
I had a list of things I was being checked for. My doctor looked me right in the eye and said don't worry it's not multiple myeloma or MS. I was in the grocery store when my neurologist called said it was MS, read me the first paragraph of the WEBMD definition of MS and told me I could google the rest. He suggested Tecfidera, I didn't know about any of them so I said OK. My first appointment after being diagnosed was about 3 months later.
I had 2 grand mal seizures in 2006. I lost an entire month from that and remember only a little bit. I do remember having an MRI in the hospital and a bunch of other tests, but I can't tell you what they were. After I was out of the hospital, the assigned neuro did an LP. Don't remember hearing anything about any findings at all, but my brain was so scrambled still. In 2014 I kept falling. Finally while camping I fell off my bike (my legs stopped working) and broke my arm in 4 places. A couple days later I happened to have an appointment with my GP. He sent me for an MRI. From those results I was sent to my neuro from several years earlier who did another LP. He was most comfortable sticking that needle in if I lay on my right side. I tried to make it easy for this man that was going to stick a ginormous needle in my back, but couldn't. Fortunately he did just fine with me laying on my left! The next week after all the test results were in, I went to his office. He came in the room and looked so sad. He said, "I'm afraid you do have MS." He looked so sad. I was relieved to find out what was wrong.
All of these stories, whether after many years ending with relief of a diagnosis, or after a very quick and shocking diagnosis have that one thing in common….the need to accept the fact that we have an unpredictable disease and that we have to accommodate and adjust all the time. At times I am in awe of all you people. At times I just feel so darn proud of all of you. Sorry for the mush, just feeling it after these stories. 😘
thanks a lot. I would like to have an oral tratament, not inyectable 3 times at week. It is Rebif 44. I read so many names of trataments .... and I would like to speak to somebody of my city tha had oral tratament, and speak face to face how the tratament has changes the live for better in that person, day by day.
Hi Writter, there are several good oral treatments if you are considering switching from Rebif. I certainly understand that it is challenging to take injectables for so many years. You can go to the MSAA website and look up all the therapies with details about how they work, how effective they are and side effects. That way, you will have the information when you go to see your doctor. If you have questions about a specific drug, there are people on this site who take lots of different therapies that can help to answer your questions. Welcome to our group! 🤗
Hi Writter , The MSAA Ultimate MS Treatment Guide compares different FDA-approved MS treatments. This powerful tool includes medical experts and patient advocates discussing their first-hand experience, so you can make an informed choice that is right for you.
mymsaa.org/ms-information/t...
I hope this helps some? 🤗💕🌠
I remember getting my results after an LP and an MRI. Doc told me that I now have temporal lobe epilepsy, presenting as just simple partial seizures, and a CIS diagnosis, in Sept 2014. I was also allowed to video the MRI scan he showed me. In Nov 2015, I get a letter saying I have a clinically definite diagnosis of RRMS, simply because I had visited him with loss of sensation in the left of my face, vertigo, and another MRI. He couldn't tell me face to face because I was in a university house, in a different area that's under a different health trust. I was then prescribed copaxone, and got a delivery of the stuff with a csync autoinjector and a sharps bin. I'm happy that he didn't see me face to face, otherwise I might have cried from sheer happiness knowing that I wasn't crazy and that I'm not making it up! My housemates were there to celebrate with me! My then-boyfriend was at work, and didn't see me until the weekend, where I enough chance to tell him about it. I also explained the different types of MS to him while we were stood in the kitchen with brews. He was happy that it didn't bother me. I'm happy too!
A couple of months prior, we were in his car, and I had a seizure. I told him if that, and he freaked out because the only seizures he knew about were generalised, as his best friend has always had generalised epilepsy. So, I had to tell him the difference between the two. Then-boyfriend is now my husband, and we joke about my immune system is destroying my brain. He understands why seizures occur, and how to care for someone as they're having a generalised seizure (move to safe spot, recovery position, time how long the seizure lasts, and if its over 5 mins or there's more than 3, call an ambulance.)
thanks, I live in Spain. I don´t know how is in Madrid or Barcelona about this subject, MS and trataments. This country is less big than yours. But even so, Spain doesn´t speak about the oral trataments. Nothing
My Hospital is ok with my Rebif because it works to me. And no more
Hi, I don't know how Healthcare works in your country, but I found this from a clinic in Barcelona. It shows that Aubagio, Tecfidera, and Gilenya, all oral treatments, are approved in your country. Maybe you have to do poorly to qualify? But I think you should ask them to explain to you why you can't try the new drugs. Tecfidera and Aubagio are both generic here, so I don't know if cost would even be a factor. Please try to get someone to help you find out about this. Rebif has a lot of miserable side effects; perhaps you could start with not wanting to have flu like symptoms and headaches all the time.clinicbarcelona.org/en/assi...
Good luck!
thanks a lot. I didn´t know. I only know about Barcelona that if a spanish citizeen wants to have this treatments of Barcelona, you have to live in Barcelona. And for me is impossible, it is necesary to rent a house there, and it is impossible. But your information I am going to give my neurologist here in Gijon, (Asturias), hospital Cabueñes.
Good luck!
I realized when I wrote the last bit that that was actually pre- diagnosis, and there was an interesting and kind of funny story day of official diagnosis. My wife is with me in the hospital when the neurologist comes to tell me the results of lumbar puncture and last MRI... And of course they were pretty much a fore gone conclusion ... But my wife pipes up and says " and he still wants to do Bike to the Bay again" to which the doctor responded " I know I am sponsoring his team"
🤣😂🤣🤗💕🌠
My younger sister had MS since her early 20’s in the days before MRI’s. She would often tell me that she thought I had it also but my response was “just because you have something doesn’t mean everyone else does “.
I continued to experience symptoms from breaking my foot when waking up and standing (told my leg must have been asleep), unable to walk in a straight line, dizziness and nausea, seizures and partial loss of vision. Each incident was treated separately and I never tied them together but my sister did.
My symptoms started in my teens and went undiagnosed until age 55 when I was admitted to the hospital and my husband had to insist that a MRI be done, not just a cat scan. The neurologist never called us with the results, we had to pick them up and took them to another neurologist. Just reading the report gave us the information that this was probably MS.
I was started on Copaxone because that was what my sister was using and I am still using. We joke that the hardest part of my diagnosis was telling my sister she was right! My sister died at age sixty and had been in a wheelchair for almost twenty years. I have SPMS but am still walking at seventy.
I'm sorry to hear your sister had it rough with MS. Mine did too. She was diagnosed close to 30. And died at 53. I was dx at 55. I can look back and say I think I saw symptoms in my late 30s that started appearing after I had a tragedy. I think that's what kicked it into gear. The medications are so much better now I think it helps us keep the MS at bay. When I was in my early forties the side of my face went numb and I went to the emergency room and they injected me with a clot buster for possible stroke and I ended up in the intensive care for several days. Then they said it wasn't a stroke and I went on with life for another decade until finally diagnosed. I still get that numbness in my face.
I didn't wind up in ICU, but I had 5 doctors at 3 facilities over the course of 12 months or so diagnose me with idiopathic TIA's. I stopped counting after the 40th one. The only time I went to the ER, they wouldn't let me leave and kept me overnight hooked up to all kinds of machines. My eventual neuro thinks they were all just weird MS symptoms.
That's a long time to worry about having strokes, that couldn't have been fun!
I'm sorry your sister went through the struggle too. It was so much harder then to get a diagnosis and even if you did there were no DMT's and pain wasn't considered MS. She had a much harder time than I ever did, but ironically she was happy that I got diagnosed. Maybe not happy, but someone that understood what she was going through. Another member to the club you don't want to belong.
My sister had already passed by the time I was diagnosed. I had no idea at the time I had it. I always felt so bad for her because she declined quickly. She ended up in a facility a thousand miles from where I lived so I only got to go there infrequently. We did talk on the phone but it was so hard to understand what she was saying. I was there with her when she passed.
I know you probably think I’m mental at this point but my diagnosis was the beginning of a journey that has made me the happiest I’ve ever been in my life! Don’t get me wrong MS is like a gnawing pain that never stops. I am sick but HAPPY!
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